In this photo from Jan. 3, 2014, Tessa Weisenberger, 14, of Kronenwetter, Wis., watches a video at her home in Kronenwetter. Weisenberger is bedridden with spinal muscular atrophy, a severe neuromuscular disease that dramatically weakens her muscles.

Txer Zhon Kha, Daily Herald Media via AP

Disease doesn't stop Wisconsin girl's ballerina dreams

Article by: KEITH UHLIG

Associated Press

January 18, 2014 - 4:05 PM

KRONENWETTER, Wis. — A debilitating disease has drained nearly all of Tessa Weisenberger's physical power, and confines her to her bed nearly all of the time.

But in her thoughts, the 14-year-old Kronenwetter girl performs pirouettes, entrechats and penchees with complete freedom. It's more than a dream. For Tessa, it will someday be reality.

The odds are against her. Tessa was found to have spinal muscular atrophy, type I. It's a genetic disease that weakens her muscles, and she has lost nearly all of her motor control. She cannot enunciate her words because the muscles in her jaw and throat are unresponsive. She cannot eat; instead Tessa gets her nutrition through a feeding tube. Even breathing is difficult, and most of Tessa's days are spent connected to a ventilator.

Tessa's strength is in her mind. She is bright and curious. But her true power comes from her will, which is strong as steel.

When Tessa was found to have spinal muscular atrophy, "we were told she had a 50 percent chance of living to age 2," said Tessa's mother, Lana Weisenberger. "She's just got a determination. It's inspiring even to us."

Tessa believes that there will be a cure to spinal muscular atrophy one day. And then she will dance.

Lana and Marlen Weisenberger adopted Tessa when she was 6 weeks old. "At the time, we did not know anything about her diagnosis. She was very content and we thought she was taking her sweet time to learn her milestones," Lana said. "When she couldn't hold a rattle, when she got tired out from the smallest task of drinking a bottle ... we (wondered whether) something wasn't right," Lana said.

After genetic blood tests confirmed the diagnosis of spinal muscular atrophy, Marlen and Lana decided they would give Tessa the "best quality of life, for whatever quantity of life she had," Lana said. "We have always encouraged Tessa to dream and reach for goals in her life. If she wanted to do something, we found a way to accomplish it in a modified way instead of telling her she couldn't do it."

Tessa spends much of her days in bed, with a laptop computer propped in front of her. She has limited movement in her arms, so she uses a mouse to negotiate through the Internet and do work. The computer is her main pipeline to the world, and it helps her learn and attend school via Skype, one class per semester. A teacher regularly visits to help Tessa with other schoolwork.

Marlen and Lana both work from home. Lana does medical transcription for Aspirus. Marlen sells nutritional supplements and is an entrepreneur. They also have a son, Jack, 8.

They live in a tidy and warm ranch home in a development in the middle of Kronenwetter. Tessa spends most of her time in her room, which is full of colorful art she created, and pictures of friends and family. She uses a hospital bed, and the small ventilator and other medical equipment she relies upon sit on a bedside table.

The home is often filled with the sound of Tessa singing. In addition to her passion for ballet, she loves music, and singing also is a great exercise for her.

Attending school via Skype is important, Lana said, because she and Marlen "want her to have as many experiences as she can."

The family also has to be careful to protect Tessa from illness; a simple cold can lead to deeper health issues and time in the hospital, so she doesn't go outside much, especially in the winter.

That's part of what made attending a Central Wisconsin School of Ballet performance of "The Nutcracker" in early December so special.

No one can really explain where Tessa picked up her deep and lasting love of ballet. Lana and Marlen never were particularly interested in the art form.

And Tessa herself can't say. "I just like it," she said.

Once her parents discovered the interest, however, they nurtured it. A few years ago, Lana and Marlen said, they hired a private ballet teacher to come to their home. They moved the furniture in their open dining and living rooms, and they helped Tessa move to music in her wheelchair.

"We kind of helped her lift her arms and move," Lana said.

"It was great," Tessa said.

Ballet has become a focal point for Tessa's school work, too. Like other students at D.C. Everest Junior High School, Tessa will produce a History Day Project. It's due later this month.

Tessa was attending Everest Junior High English teacher Lori Bychinski's class last semester. Bychinski urged Tessa — and the other students in her class — to pick a subject they loved for their projects.

"Of course, Tessa picked ballet," Bychinski said. "She's announced to the world that she wants to be a prima ballerina."

About that time, Everest teachers and Tessa learned that Central Wisconsin School of Ballet's "The Nutcracker" would feature dancer Misty Copeland of New York's American Ballet Theatre. Copeland, who is black, is renowned for breaking a racial barrier in ballet.

Most dancers are white, Tessa said, because that has been the tradition of ballet. "Black ballerinas were not considered aesthetically pleasing," Tessa said.

Tessa wants to do the same thing for people with SMA, she said.

"It's almost like the stars were aligned," Bychinski said.

It took a great deal of effort, but Tessa was able to attend "The Nutcracker," and she was able to meet Copeland.

It was short meeting. Tessa told Copeland about how she wanted to break barriers, too, just like Copeland did.

It was enough to bring Copeland to tears, Lana said.

The current ballerina gave a note to the girl who one day wants to be a ballerina. It said: "Thank you for your beautiful spirit."